What Recovery Really Means to Me

Hi everyone,

I've felt compelled to make this post as I think there is a bit of a danger in getting this twisted.

Given most of us who have/have had TMS symptoms are perfectionists, we want the 100% fix. We figure (which is fair enough) that because some structural issues can be resolved 100% (I have had family members who have had such surgeries for non-TMS related issues), then why not this?

This is something I grappled with for months (even after a lot of progress), and it was only at the end of what I consider my healing journey that I finally relented and accepted that 100% for me wasn't realistic, nor was it necessary.

I do only want to speak for myself and perhaps there are "better" outcomes than mine (appreciating that comparison is for the most part fruitless), but from what I've seen from others (including fellow coaches who are highly experienced) is that this is the norm. If someone heals and never gets their symptom again for the rest of their life, then I am happy for them and impressed!

This is what I have gotten to (the first part will be before the second part after, or where I am now):

Pain every day between a 7/10 to a 10/10 every day, dominating my life and it was basically all I thought about -> for an average day, I would call it a sensation at a 1/10. This means that for the most part I am not even aware of it, but if I thought about it I could feel something. Most days I don't even think about it as life is distracting enough, so practically the "pain" is a 0. I can go weeks without even thinking about it. The pathway still clearly exists, however, as I will discuss below.

Completely restricted physically, I couldn't walk or bend over without pain flaring. At my worst, I had to get on the ground to tie my shoes. Everything I did I had to consider how it would impact my pain -> completely unrestricted physically, in fact no exercise whatsoever causes pain. I can play full sports games and feel absolutely nothing. When pain does get triggered, it is completely emotionally caused, meaning that physical activity or what I do physically isn't a trigger in the slightest. I am more likely to flare up sitting still doing nothing than I am running at full speed. Because of this, I have my life back in a complete way physically. I don't even consider the pain anymore in relation to physical activity. Someone could ask me to run a marathon, and despite the issue there being my aerobic ability, whether my groin/pelvis/back could take it wouldn't even be a consideration.

Flare ups super consistently, if I wasn't in a flare then one was around the corner in the next few days, pain often got to a 10/10 in these flares and the flares often lasted for weeks and I had no idea why -> now I might have a mini flare (which I describe as getting to a 5/10 pain wise but no more) once a month (at the most, I might not and have a clear month), and it will last a day max. I have a stronger flare maybe once every 6 months to a year (and the pain gets to maybe a 7, I haven't felt the 8/9 or 10 since pre healing) and that might last maximum 2 days. I know why these flares happen and it is pretty obvious when I check in with myself emotionally. This gives me the knowledge to soothe what I need to soothe and reflect (plus an understanding of what is going on is soothing and also empowers me to be able to do something about it if necessary).

Ironically, me being accepting of this is a massive sign of my healing, as perfectionism was a big contributor to my symptoms and the situation which gave rise to them in the first place. The more I fought it, the worse it gets, and I am confident that the above will get even better the more accepting of it that I am (even though that isn't the point - the above has continued to grow and the timelines for flare up frequency are widening).

We want to sell hope and what is possible, but at the same time there is a risk of making people feel like they aren't doing it properly or failing if progress isn't quick or it doesn't match up to others. It took a good year to make those changes above (it doesn't need to take this long as I largely did it myself and was only coached at the end, but if I had to do it again I'd be comfortable with it taking a year again given I was in pain for 6).

I appreciate that my brain still alerts me to emotional danger or things I need to work on. I also acknowledge that this is a lot easier for me to say now that I am out of the worst of it (and that flares only last a few days max).

Healing to me is getting a good jolt of motivation and encouragement, and hopefully slight progress from the education and initial TMS recovery, to enable you to push your limits and get your life back (which really is the end goal). Through an understanding of you being okay physically (there is no structural danger) as well as how your emotions work with your symptoms/flares, you can work to get back to all activity whilst doing the emotional work in the background. As this happens, your brain will react to the safety you have generated, symptoms will lessen and indifference will grow. Once the care goes, you're there (symptoms or no symptoms).

Hopefully this serves as assurance rather than discouragement. Is it possible (at least for me) to completely rewire the pain pathway so that it no longer exists? I'm not sure. Would my brain just find another way to alert me? Probably (and I have experienced this in very short bursts). Is it a bad thing that my brain alerts me in this way? No, I would prefer to get to the point (if possible) that I have worked on myself enough emotionally that it doesn't feel the need, but I always want to get better and grow regardless of if it has this effect

The above is enough for me to consider myself fully healed (technically this is true also as it isn't chronic anymore), and I hope it would be for you as well

Thanks,

Adam.

 

Thanks for sharing this, Adam; it does feel like an important clarification and something I have also grappled with—if my body was asymptomatic before, why can't I get back to that? In my worst times I find it really hard to let go of my unrelenting desire to be perfect again, or what I now see as perfect, even though the truth is at the time I was in a far worse place emotionally, which surely is what matters at the end of the day.

The relief I have been experiencing lately is not just a relief from symptoms, but a relief from the weight of the expectations that I and others have put on me over the years. That emotional weight prevented me from, excuse me, fucking doing anything in my life for all of my twenties. I felt trapped and depressed and doomed every hour of every day and I didn't know why, and I didn't even know I was feeling these things. I wasn't enjoying anything, except for anything that provided a strong hit of escapism. The chance to get out of all of that is priceless. Who cares about some tiny symptoms kicking around?

I'm finding it useful to ask myself what I really want (there's a great post about this on this forum by Steve Ozanich, I think it's titled Fear vs. Love). My girlfriend asked me that at one point on a day where I was having crazy symptoms and was in total despair, and I thought for a long time and said, "freedom." I didn't ultimately need to feel no pain ever, I just didn't want to be under the thumb of fear; trapped in my life with no way out. What you are describing as I understand it is that you have freedom in your life again to do what you want and be who you are.

 

Spot on and I love what you have said. It is definitely more freedom in life but especially emotionally.

I may not have had my symptom ever before prior, but I'd never trade not having it ever again for going back to the emotional place I was before. I was suffering mentally/emotionally a lot more than the physical equivalent now!

You are very wise to include "be who you are" as well as "do what you want", because the second one is rather pointless without the first (assuming the first means more actions themselves). I didn't address the first one as much as I should have in what I wrote, but that freedom is priceless like you said and worth it to gain at the end of this journey